Tag: story

My EAP counselor suggested I go to an in person support group at some point.

While I don’t necessarily think we were well matched, I took the advice to heart. When I asked her how I find one, she was particularly unhelpful. She basically said to look for one on my own… and they are usually associated with churches. That was discouraging. But then I saw an advertisement posted for Haven of Northern Virginia in the waiting room of the girls play therapists’ office. There was a contact email, so I sent an email immediately. They contacted me and told me about an upcoming widow’s support group – 6 weeks and free! I read about the organization and it sounded pretty perfect. Unfortunately, the very first meeting was the day of Tim’s New York Celebration of Life, but they let me join anyway. I was sorry to miss the very first week when everyone shared their stories. I lined up childcare for the 5 Saturdays. This past Saturday was my first group meeting.

I had people ask me if it was something I needed, if it was something I’m ready for… at the end of the session, one of the women said she hoped I would return.

This made me smile. Maybe it was Tim’s rule following tendencies rubbing off on me, or his inclination to trust the experts, but it honestly never occurred to me not to return, or not to simply trust the process.

I don’t think I am going to enjoy it, but I simply recognize it as something I should do. One of the things that I should do. If I were my friend, instead of me, I would tell me to do it.

Early on, they pointed to where the group had written down what they want to get out of the 6 weeks, and I was welcome to add anything to the list. I just started at it. I racked my brain. I couldn’t answer that question. The Hermione Granger in me wanted to have an answer. People had written good things. Overwhelmed, taxes, the holidays… on and on. All I could think was “grief” but I couldn’t formulate a thought around that.

With a day to reflect, I think I realize now that this is just one of those things I am doing for me. I might not enjoy it exactly, but it’s a self-care thing.

Another thing the EAP counselor told me which really baffled me at the time she said it was that I was so busy, but I really needed to take the time to grieve. And I just kept thinking “what does that mean?!” She went on to say that she worried that if I didn’t, I would rush into another relationship. Um, no. That really turned me off. However, I think it was based on her personal experience with a similar situation. I just kept thinking at the time, how do I do that?! How exactly do I grieve? Do I pencil it in after the kids go to bed? Is there something specific I’m supposed to do? Grief is my constant companion.

Grief. It lives inside of me – in my chest, in my throat, in the pit of my stomach. I’m just plain sad inside, all the time. Even when I’m happy, I’m sad. It’s similar to being pregnant in that whatever you do, you have the baby with you, there’s no separating from that. The grief, the just plain “I miss him so much” of every single moment, it’s always there.

One woman shared something she had read about the fact that you can’t wait for the old you to come back. It can’t, it won’t – she is gone. There’s a new you, and you have to learn to accept her, love her. I think that really resounded with all of us. In my head, I’m still always telling Tim everything. My best friend, my soulmate. The father of the three small humans that I live with. It’s not just the grief that is always with me. Tim too, is my constant companion.

People are always telling me I need to take care of myself. That if I don’t, how will I take care of A, R and D? So attending this group is for me. I am taking steps to learn how best to handle the kids’ grief, and the many issues that will come up with them, and with being an only parent. (Another widow online gave me that term, “only parent” rather than “single parent” and I do prefer it.) Most of the women in this group do not have children, or dependent children, certainly none have children as young as mine. So in this group the focus will be on grieving as a woman who lost the love of her life. So I will “lean in” to the process, give myself over to it. It may not be easy, but I feel confident it’s the right thing to do, it’s what Tim would want me to do.

Most of the time, I grieve as a mother. I grieve their loss, I grieve the loss for them, I even grieve Tim’s loss…when D started walking and he wasn’t there to see it. But making the time every Saturday to go to this group, will be about my own loss. I go through my days, especially at work, pretty numb all the time. I turn off emotion so I can function. I need to function at my job, I need to function as the sole bread-winner, and when I’m not at work I need to function as their mother. I am always in charge as their mother. For an hour and a half on Saturdays for 5 weeks I can let someone else be in charge. They can moderate the group. I will move through the grief however it happens. It will be a time I can shake off the numb and let myself feel.

I spent every single day from May 17th through June 10-11th at Fairfax Inova hospital. 25 long, full days, in the cardiovascular ICU.

For the most part, I am glad that most people did not see him then. He would not want anyone to see him like that. While he wouldn’t have wanted me to see him that way either, I know he wanted me there. He made that clear in our last moments talking together. And I also know, because I would have wanted him there for me. When I was in the hospital for all three deliveries, I insisted on him staying there with me throughout… even when we had another child or children at home for whom we needed to get childcare.

So my goal is to spend some time writing about our hospital time. Using my trusty notebook that I scribbled away in every day while I was there. It was 25 days. It was a lifetime, and it was also the blink of an eye. I’m hoping I can do the time justice for the kids to read about later. More to come… these may come in time, interspersed with some updates on the now.

This Deathcab for Cutie song was brought to my attention by an online widow’s group. It’s very powerful to me. Very close to home. I pretty much lived it.

“What Sarah Said”
And it came to me then that every plan is a tiny prayer to father time
As I stared at my shoes in the ICU that reeked of piss and 409
And I rationed my breaths as I said to myself that I’d already taken too much today
As each descending peak on the LCD took you a little farther away from me
Away from me

Amongst the vending machines and year-old magazines in a place where we only say goodbye
It stung like a violent wind that our memories depend on a faulty camera in our minds
But I knew that you were a truth I would rather lose than to have never lain beside at all
And I looked around at all the eyes on the ground as the TV entertained itself

‘Cause there’s no comfort in the waiting room
Just nervous pacers bracing for bad news
And then the nurse comes round and everyone will lift their heads
But I’m thinking of what Sarah said that “Love is watching someone die”

I thought it most appropriate for my first blog post to be the post I shared on my husband, Tim’s Caringbridge website from early June, 2017. Tim went into the hospital on May 16, 2017, and on May 18th our friends posted the first Caringbridge journal update. By that point, my whole life had flipped upside down. Over the weeks that followed friends and family near and far were following our story on Caringbridge and using it to sign up for ways to help us… but I realized most were still confused and had more questions. Most questions I could not answer, but I felt that many were still left wondering “what happened?” and I could respond in a more comprehensive way. So I told our friends that I was going to write a “What happened” post. And one of them said she liked to think of it as Tim’s origin story – as a super hero would have. So I made the title “What happened? Tiny Tim’s origin story.”

It turned out that that post was pretty popular with 178 “hearts” and 69 comments directly on Caringbridge – reaching countless more through all those who shared it on social media.

Now, as I sit down to write this blog….since my life has been torn apart by this… this train wreck that came crashing through and changed my world forever… now, it feels like it’s my origin story.

“What happened?” (Tiny Tim’s origin story)

Journal entry by MaryBeth Gaige — 6/4/2017

“What happened?”
It’s probably the question that I get the most. And I get it. How did I go from having my fun-loving, kiddo-loving, running, weight-lifting, lawn-tending Husband by my side, to holding his hand every day in a bed, fighting for his life in the cardiovascular Intensive Care Unit of Fairfax Inova Hospital?I thought I would try to write a post in an attempt to answer that.The executive summary I usually give is:
He got sick out of nowhere and now has been in the ICU in critical condition since 5/16…He got b cell lymphoma (in his spleen) and we had no idea, wiped out his immune system. Then got a bacterial infection and without a way to fight it, went into septic shock followed by multiple organ failure. And suffered a brain hemorrhage from everything else going on. He’s on life support. Taking it one day at a time…Here’s the longer version..
First, what led up to the hospitalization from my point of view:Starting on Friday night before Mother’s Day, Tim was complaining of bad hemorrhoid pain. This wasn’t something he wanted to tell everyone so when I cancelled my manicure plans Friday night and through Sunday when anyone asked I just said Tim wasn’t feeling well. To detract from having to tell them he was having hemorrhoid pain I usually made some jokes about a “man cold” or simply said he wasn’t feeling himself.
The only thing Tim complained about all weekend was hemorrhoid​s, but it was clear they were bad because he didn’t really want to hold the baby and he didn’t leave the house although he did get up and join us for meals. I asked him to see or call the doctor but he said that he’d had them before and just knew what they would tell him. I didn’t push it. By Sunday night though he had a pain on his right side in his chest and a fever, and felt swollen in his neck. That didn’t sound connected to hemerrhoids to me, so I said we had to go to the doctor and he agreed to go Monday morning. He asked me to take him and so I took him Monday morning to the walk-in clinic at his regular doctor’s office. I had been up with the baby with near-newborn regularity, so when he went back to see the Dr, I actually fell asleep in the waiting room. He came out and I popped up to see what was up. He said he got two prescriptions. One for a special foam for hemerrhoids, and the other for an antibiotic for a tooth absess and had to make an appointment with our dentist at the end of the week once the antibiotics had set in. I was surprised. He had had a tooth ache about a week before, pulled out a popcorn kernel and never mentioned tooth pain again! I didn’t ask if he had a rectal exam; I didn’t ask if they did blood work. I did ask about his swollen lymphnoids in his neck. He said he’d been told that was a feature of the tooth absess. Well, ok then. We went to our Target pharmacy. Tim was extraordinarily weak. I assumed that was from fever and a bad infection and we needed to get those abx in him! Got his prescriptions, picked up a lunch for me and got Tim home and settled up in bed, and I went to work. That evening he still had a fever, but with the kiddos we know fever is highest at night. When the next afternoon (5/16) he woke up, had some yogurt before abx dose #3, and called me to say he vomited, still had fever and sweating – I said we were going to the ER. I got home and he really wanted to shower before going, so I let him do that while I got Annabelle from the bus then grabbed him to go to the local Inova ER on Ox Road. Again he was weak…wanted me to do all the checking in and most of the talking to nurses and doctors. I had Annabelle there so I was also trying to keep her occupied with worksheets.
After a slow-pace intake, things moved fast after blood pressure and blood work. He was pronounced hypotensive (abnormally low blood pressure) with septic shock. I heard the ER doc tell him, that it might sound like he was over-reacting but he was going to send him via ambulance to Fairfax Inova Hospital ICU. The nurse told me one person could ride with him in the ambulance with a meaningful look at Annabelle. Then said she recommended getting my daughter with a babysitter and meeting Tim there. I said I needed to pick my other two kids up anyway. Tim asked if I was going to the hospital. I said “Of course!! Let me just get the littles and get them all home with someone.”
Fortunately, as you all know by now, we have an amazing village, so a friend and then a neighbor took over at home for the night and I got over to the hospital. On my way, the ER Dr called me with his room number at the ICU. After I parked and asked directions to the ICU, I got a text from Tim with his room number and then “I have no white blood cells.”
When I got to his room they were about to take him for a CT scan. He told me they were going to test him for HIV. He said he should have had me bring his phone charger. He asked me if I brought a book. I asked if he wanted the TV on, I looked for sports, but he was happy with HGTV. Following the CT scan, we were told he had pnemonia in both lungs, and they were likely going to need to intibate him. He had an oxygen mask and it was getting harder for him to breathe. He told me he was so tired and wanted to sleep. That’s the last thing I remember him saying to me. We spoke to a Hematologist who said he would want to get some bone marrow to test. The intibation came on quick, a lot of people in the room, and it was scary​. In the night they called me to consent for kidney dialysis (CRRT) and as soon as I arrived Wednesday morning (5/17) they told me his lungs and heart were failing and I had to consent for ECMO (and a million other things). And that people needed to come.What we know now:

After over a week in ICU, Tim was diagnosed with Splenic marginal zone B-cell lymphoma (SMZL) via a Flow cytometry. SMZL is a rare malignancy involving the spleen, bone marrow, and frequently the blood. This wiped out his immune system.
He had a rectal absess (apparently very common in 30-40 year old males) which he mistook for a hemmeroid, and when it ruptured, it caused a bacterial infection which we could normally fight, but sent Tim into cardiogenic and septic shock with severely low oxygen in his blood, and acute respiratory failure. This also caused acute kidney injury, and disseminated intravascular coagulation (blood not behaving properly) as well as acute liver injury caused by insufficient blood flow to the liver.
On his fourth day in the hospital, a brain CT revealed a left frontal intracranial hemorrhage (which correlated to why he wasn’t able to move his right arm) cerebral brain compression and intracranial hypertension.

Basically, this nasty cancer attacked his bone marrow and blood, his blood got an infection that went everywhere and the bad blood mucked with everything. His medical care has been the best anyone could hope for, and yet he doesn’t just have one or a couple things wrong. He has all the things!! I think every type of medical specialist has seen him now! Every day is a balance to try to find the right mix of life support machine settings, tests, drugs and actions to save him. There are so many things wrong at the same time, and so much is interconnected, it’s a constant balancing act.

Tim is as sick as it is possible to be, but every day he’s fighting. Thank you for reading all of this. Thank you for caring, and for loving us. Your support is felt! Keep all the love, thoughts, prayers, vibes coming. We appreciate it all!